I wonder

If ones reality is a lot of pain and tears, should that reality be shared?… or should it remain hidden? I snapped this the other day when I was hurting emotionally while responding to a message.  Part of it is trying to accept myself as an imperfect person, as a real person, as my own person. The whole range of my experiences.  To document my reality, highs and lows, is something I’ve been doing for over a decade now.

Sometimes I’ve walked down the street looking sad, or mad, or something, had some guy say hey, you’re pretty, you should be smiling.  I’m like what?… Do I have an obligation to the world to be always aesthetically pleasing, always happy, always the most enjoyable facade presented?

I wonder what it would be like to trade lives with different people for a week at a time.

I wonder how well other people would cope if they had to live a week in my body.

Perspective changes so many things.  How would it  be for someone else to deal with my body and brain, my chemistry. They’d probably go straight to emerge in desperation, only to discover that this was my normal state of being and feeling and there wasn’t anything the hospital could do for them.   I still remember when I discovered pain killers didn’t work, that fear, that panic. That moment of overwhelming emotion of wondering if it were actually possible to live with chronic pain like this.

I try not to feel patronizing when people struggle with minor ills. Sometimes it’s hard though to hear people complain freely about little small ills, when I struggle not to show my pain day in and day out. Struggle for it not to be all I think about, all I talk about.  Struggle not to show it on my face and in my movements.

I try to keep my venting and whining limited to my blogs and to groups online that are specific to chronic pain issues where I know I’ll be sharing with people that can really understand.

It’s not that I don’t have empathy when other people deal with minor pain, or fatigue from a long day or a bad’s night sleep, or nausea, or illness, etc, I have a lot of empathy, and feel badly when someone is under the weather, or overworked.  It’s just that sometimes I long to know what that was like again, to feel so crappy because of something minor, that would pass.  Or because I’d gotten some overtime, or what have you.  Unlike living with something major, that will never pass.  My good days now are like bad days of when I was a healthy person.

And seriously, I don’t exaggerate my illness, if anything, I downplay it.  The actual reality of how much is fucked up in my body, is so.. vast… that it borders on the ridiculous. I need extra paper to fill out medical forms because there is not enough room to list all my issues, symptoms, medications, etc.  Ironically, if anything, I’m stoic, and I will pretend and act more well than I am. I’m not a ‘whimp’. I’m a previous martial artist. And anyone who has seen me bottom can tell I can take a hell of a lot.  Not to mention that these days I’m bottoming with all my additional pain. (not to mention I won’t play on pain killers so I’ve usually gone off my medication for a party till after I’ve scened).

I think the thing I find the hardest, that I’ve heard other people with chronic health issues relate to, is being accused of ‘using’ my illness to garner sympathy and attention.  This to me is one of the most hurtful concepts ever. For me some of my hardest areas are the guilt associated with what my illness puts Wolfe and other loved ones through.  I have massive guilt that I’m a broken person, and feel like I’m incapable of ‘pulling my own weight’ so to speak.

The idea that someone thinks I would use that, in any way, as a tool to manipulate other people, sickens me.  That someone would pretend to be ill, or use illness to manipulate others is an abhorent thought to me. To know the suffering my illness has put Wolfe through, that all he has had to go through because of me and for me. I wouldn’t wish that on anyone, least of all him. I would do everything in my power not to put him through any of that strain and pressure.  I do everything I can to minimize his work and his worry, and I feel guilty for my needs, my limits, and that how much pain my pain can causes others that love and care for me.

The worst part of my illness is how it affects the people that love me and care for me and my relationships with them. The idea that I would do that in any way intentionally.. is.. disgusting. It’s one of the reasons I blog, is to let people know where I am at, and what is up with me. Because people care, and that’s wonderful. That I would ‘use’ that care, that I would take advantage of that human sympathy for what? for anything, is… ugh. I do use it for support, but I don’t feel I fish for it.  I also feel I give as much if not more in return. That’s what keeps me blogging, is not so much what people give me, but it’s a way to give to others.  Still selfishly motivated, but I need to feel like I can contribute something positive to the world.  To hear that people relate and get something out of what I write that is meaningful to them, is worth it.

I’ve had it implied to me a few times by a couple of people, that I was using my illness to garner sympathy and to manipulate, and honestly, I think it’s probably the very most hurtful thing anyone could imply or accuse me of.

Mind you, the people that have implied it are the kind of people that are expert and knowing what to say to or about someone that is going to cause maximum emotional damage.

Pair that with someone like me who is an emotional weakling right now.. well.  I’m going to keep myself a bit more isolated.

I miss being able to reach out to my friends, in other places, especially FetLife, but I can’t find a way to do that right now and protect myself from my own over sensitivity at the same time.

I feel guilty.  I feel like I’m walking away and abandoning my friends because I’m too weak too cope. I had to walk away from FetLife again for a while. I can see from my mailbox all the notices from fetlife saying people are writing me or commenting on the site. But I don’t know what they are saying, so I can’t reply.  I can’t manage the temptation myself, so I asked Wolfe to block me from the site again using his tech skills, lol.

Not sure how much of a break I’ll take, but I’m not there for now.

I wish I didn’t feel like I have to put that barrier up, the barrier to keep myself safe also disconnects me from people I care about.

I should probably stay off the site until/if such a time they put in an ignore feature.  If I could isolate from reading a few people entirely I could probably manage.

I just need structure to prevent myself from trying to go in and mend fences in minefields.

Unfortunately the drive for me to fence mend is great and I tend to try to tiptoe into the mindfields thinking maybe If I could just… *boom*!

Okay, that’s all the time for me online. I’m on an internet diet right now.